Wednesday, January 28, 2009

Today we had a big snowstorm. The boys didn't have school, I didn't have work, and Al's final was cancelled due to the weather. What was left to do??? Play of course!!

We made cinnamon rolls for breakfast along with yogurt and hot tea. The boys gobbled it up and asked for seconds. After gorging themselves the bounced off to play Legos. Carson sat and built creations with his new Lego set for hours today. He made a little dog and his owner. They needed a house and a dog house both with windows of course. The dog owner also needed a truck so Carson built one too. The Lego building was a blast and Carson was super proud of his architecture.

Eli wanted to make pictures with glitter glue. He gathered all of the glitter glue containers in the house and laid them out on the table. After picking up each color, shaking it to determine how much goo he could squirt out, and then organizing them by "prettiness", a masterpiece was created. Blue construction paper covered with piles of glitter glue layered the kitchen table. Elias was grinning from ear to ear with hints of silver and green glitter flecks across his lips and cheeks. I can only imagine how long it will take for his masterpiece to dry!

After lunch we had nap time. This always takes forever at our house but Al and I bribed the boys with time in the snow if they went to sleep. It worked and they were out cold in no time. Nap time ended and the snowsuits were pulled on. Carson and Eli looked like little stuffed piggies all bundled up for the cold. Al went outside and had a snowball fight with them and build a snow castle fort. Six rosey red cheeks later and everyone was inside eating homemade chili for dinner. My parents came over to eat and we had a great time. The boys watched Thomas' Snowy Surprise with some cherry cheesecake ice cream and hot tea for snack and then headed up to bed. What a great snowday!

ACCKKKK!!! I don't think my brain can take anymore of this crazyness. In the past two weeks we have had more medical intervention than the past two months. I am stressed to the max and exhausted. It all started in the beginning of January when Eli broke out in a weird fungal rash all over his trunk and upper limbs. They took a culture but it somehow was lost in transit to Children's Hospital. He has been on grisefulvin (and antifungal) for 4 weeks now with 2 more left to go. The rash just now started to clear up a few days ago and we (as well as the doctors) were getting worried. They do not know why his immune system allowed him to have such a wide-spread fungal infection which is rare but he seems fine otherwise.

His physical medicine appointment was another story. Eli has been doing worse over the past few months in terms of his gross motor skills and swallowing. After he got his cast off Al and I immediately were worried about his gait and external hip rotation. He couldn't walk and when he did it was dragging his right leg behind him. Going down steps was a no go without one of us holding both hands or carrying him all the way down. Eli was falling a ton and kept saying his legs hurt in addition to his ankles being super tight. One night after bath I was putting lotion on him and he had extended clonus only on his right ankle which concerned me a great deal. I guess I was right because his phys med doctor was quite alarmed by his declining neuro status as well.

She ordered a bone density scan to make sure there is nothing wrong with his bones because he shouldn't have broken his 3rd metatarsal jumping on a matress. We had the scan on Monday and I will get the results this Friday. She also ordered an MRI of his brain and spine. It was supposed to be done on Monday right after his bone density scan but the anesthesiologist was concerned with his aspiration and respiratory compromise so it will now be done intubated and under general anesthesia on Monday Feb. 2. My poor baby has to be put under for yet another procedure. His doctor also ordered another swallow study to evaluate his dysphagia next Thursday the 5th. Cross your fingers for that one. Eli will be getting casted for AFOs in the coming weeks due to the decline in his gait and function of walking. I hope he pics out a pattern that he likes so we don't have to fight him to wear them!

With all of this going on I have been a mess. I hate having things pop back up from his NICU days. It has almost been 4 years since his scary arrival 15 weeks early and during times like these I hurt inside for the struggles he continues to face. We are unimaginably lucky and blessed with how unscathed Elias has been for a 25 weeker but neuro changes and g-tubes somehow eat at my soul when thinking of my rambunctious little man. It truly is a journey that we will get through together.

The uvulitis came into play with the only member of our household that seems to NEVER get sick....Al. He woke up at 3am yesterday choking and when he calmed down enough to let me look in his mouth, his uvula (the dangly thing in the back of your throat) was swollen to the width and length of his pinky!! We called my parents to come sit with the kids since they were sleeping and headed over to the ED. He got a steriod shot in his hip and put on oral steriods for the next five days. The ED doc said someone had to stay with him for 24 hours in case the swelling got worse and blocked his airway so I had to call off work :( Everything ended up okay though and he is now sitting next to me complaining about me still being on the computer!

Thursday, January 22, 2009

The boys both got new haircuts this week. They were looking rather shaggy so it was time to break out the scissors and comb and trim those mops up! Carson and Eli sat still better than usual and then enjoyed a long bubble bath filled with their favorite bath toys. Check out the photo shoot from post-bathtime.

Tuesday, January 13, 2009

Today was the big day .... off with the cast!! Elias had his whole day planned out. He was going to school, eating lunch, playing with trucks, getting the "stinky green cast" off, then coming home for the longest bubble bath known to a preschooler. Thankfully that is exactly how the day went (with a trip to Starbucks for a treat thrown in after his ortho appt). The only unfortunate part to the entire day was when Eli tried to walk for the first time.

He simply could. not. do. it. ACKK! What were we going to do? He was crying because he was scared. I was nervous because of what a big set back this was in his muscle strength. Carson was worried about his little brother. And Al just wanted everyone to calm down and recollect. The ortho said it will take Elias awhile to get back to walking normally because he lost a lot of muscle mass in both legs on top of his underlying hypertonia and tight tendons. He basically has to relearn to stretch out that ankle and straighten out his hip and knee correctly again.

The poor thing is scared to walk not and gets very frustrated. He said the kids will make fun of him and call him a baby at school. He is doing a bit better after his bath and a good, long stretch. My God was his leg nasty! Al wouldn't even touch it. The skin was sloughing off and stunk to high heaven. He also has some reddened areas along his bony prominences from cast pressure that will need to heal. The xray looked great though and we don't have to see ortho again!! Back to full time physical therapy and adaptive physical education. YAY!

Saturday, January 10, 2009

Carson is learning about the World at school right now. His teacher is having them research a different continent each week and travel to a few new places that are found on that continent. They get to sample food common to each area as well as discover language, culture, dress, and environment. Carson is loving every minute and comes home on the bus each day with new facts bubbling out of his mouth. This week is North America week and they had a Ohio State day, Mexican feast, and on Thursday will be learning all about Hawaii. He gets to wear sunglasses, a beach hat, and a flowered shirt!

The first week back he made a craft globe with all of the continents drawn and painted on it. You could see the pride in his face when he pulled the colorful sphere out of his bookbag. His words of the week were North America, South America, Antarctica, Africa, Asia, and Australia. Carson sat down with his flash cards and nailed each word. Tuesday morning he couldn't wait to get on the bus and let his teacher know that he did his homework!

This time has been so an enjoyable experience for both Al and I. I cannot tell you how proud we are of our big guy. Carson is shining and soaking up all the knowledge he can get his growing hands on.

Background info

Meet our two boys Carson and Elias. C was born at 30 wks and Elias at 25 wks. Follow us as we journey through life raising two premature boys. The roller coaster ride of the NICU hasn't stopped since we stepped out of those hospital doors but we learn, love, and laugh our way through it all. When I'm not chasing them or helping build construction sites out of tonka trucks, I also work as a NICU nurse in a level III NICU and am working on my Masters as a Neonatal Nurse Practitioner.